Jodie’s story

Jodie is 21 and from Barnsley. She and her family have been visiting us at Bluebell Wood since 2009. Her mum, Julie, tells her story:

“Jodie was a perfectly healthy baby. When she was two years old, she started having slight problems with her balance. Then her speech started to go backwards. She had lots of tests, including for glue ear, and had her tonsils out, but didn’t get any better.

”After being referred to a consultant, we were told when she was just four years old that she had a very rare syndrome called San Filipo A. This means that she is lacking an enzyme in her body that gets rid of all the waste products in her cells. This affects everything in her body – it’s like living in a house and never being able to take your rubbish out.

“Doctors told us the devastating news that she would die between the ages of six and fourteen, and for the last few years of her life she would be in a vegetative state. Looking at my beautiful girl, it didn’t feel possible. It felt like our future had just been ripped from us, all our hopes for the future had disappeared. We were grieving, but she was still running around the house. It took us 12 months to come to terms with her diagnosis and start to live a normal life.

“Jodie has been really poorly at times, and spent a lot of time in hospital. We first came to Bluebell Wood in 2009, after she was transferred from hospital for end of life care. At first, when Bluebell Wood was mentioned, we didn’t want to go. She stopped breathing at the hospice, but we wanted to fight for her, and the nurses worked so hard to keep her breathing and with us.

“Bluebell Wood is not just for poorly children, it’s for the whole family too. My other children Sydney and Lloyd were part of the siblings group when they were younger, and they could just play, without having to explain about Jodie. Everyone understood.

“The hospice is really about improving the life that Jodie has – we can’t cure her, but we can make as many wonderful moments for her as we can. That’s what Bluebell Wood does for all children. You would never think that staying in a hospice is brilliant, but it is. No one feels sorry for you, they just want to help you make the most of each day.

”Jodie is so tough, she’s gone through so much pain in her life that she deserves to be as happy as she can be. We do have some really bad days, but we’ve got to enjoy life and make the most of it.”